Enroll-HD is both a worldwide observational study and a clinical research platform supporting various studies and trials, with an overall objective to accelerate HD therapeutic development. Clinical data and biosamples collected in Enroll-HD and other HD studies are made available through the Enroll-HD platform to any verified researcher per the Clinical Data and Biosample Access Policy to extract as much knowledge as possible. As ever, we are enormously grateful to the thousands of participants and families around the world who selflessly give their time and energy, as well as to the dedicated staff at the clinical sites who make Enroll-HD possible.

When publishing their findings, researchers using these data and biosamples are expected to adhere to the Enroll-HD publication policy, including full acknowledgement of the individuals who contributed to the collection of the Enroll-HD data. The publications hosted here have all used the Enroll-HD datasets that are periodically made available and illustrate some of the areas of HD research that Enroll-HD is directly influencing.

If your publication that uses Enroll-HD data is not included in this gallery, or you know of a publication that should be included, then please let us know at In the near future we will also be including publications that use other HD study datasets available through the Enroll-HD platform, please let us know if this applies to a publication of yours.




Hamilton JL, Mills JA, Stebbins GT, Long JD, Fuller RLM, Sathe S, Roché M, Sampaio C

Defining clinical meaningfulness in Huntington's disease
Mov Disord
May 05, 2023
PMID: 37147862

Long JD, Gantman EC, Mills JA, Vaidya JG, Mansbach A, Tabrizi SJ, Sampaio C

Applying the Huntington's Disease Integrated Staging System (HD-ISS) to observational studies
J Huntingtons Dis
May 02, 2023
12 (1) :57-69
PMID: 37092230

Gunn S, Dale M, Ovaska-Stafford N, Maltby J

Mental health symptoms among those affected by Huntington's disease: A cross-sectional study
Brain Behav
Apr 01, 2023
13 (4) :e2954
PMID: 36880126
PMCID: 10097147

Ruiz de Sabando A, Urrutia Lafuente E, Galbete A, Ciosi M, García Amigot F, García Solaesa V, Spanish HD Collaborative group, Monckton DG, Ramos-Arroyo MA

Spanish HTT gene study reveals haplotype and allelic diversity with possible implications for germline expansion dynamics in Huntington disease
Hum Mol Genet
Mar 06, 2023
32 (6) :897-906
PMID: 36130218
PMCID: 9990985

Lunven M, Hernandez Dominguez K, Youssov K, Hamet Bagnou J, Fliss R, Vandendriessche H, Bapst B, Morgado G, Remy P, Schubert R, Reilmann R, Busse M, Craufurd D, Massart R, Rosser A, Bachoud-Lévi AC

A new approach to digitized cognitive monitoring: validity of the SelfCog in Huntington's disease
Brain Commun
Mar 06, 2023
5 (2) :fcad043
PMID: 36938527
PMCID: 10018460

Stoebner ZA, Hett K, Lyu I, Johnson H, Paulsen JS, Long JD, Oguz I

Comprehensive shape analysis of the cortex in Huntington's disease
Hum Brain Mapp
Mar 01, 2023
44 (4) :1417-1431
PMID: 36409662
PMCID: 9921229

Ko J, Furby H, Ma X, Long JD, Lu XY, Slowiejko D, Gandhy R

Clustering and prediction of disease progression trajectories in Huntington's disease: An analysis of Enroll-HD data using a machine learning approach
Front Neurol
Jan 30, 2023
13 :1034269
PMID: 36793800
PMCID: 9923354

Sokol LL, Nance M, Kluger BM, Yeh C, Paulsen JS, Smith AK, Bega D

Factors associated with the place of death in Huntington disease: Analysis of Enroll-HD
J Palliat Med
Jan 27, 2023
PMID: 36706436

Fang L, Monteys AM, Dürr A, Keiser M, Cheng C, Harapanahalli A, Gonzalez-Alegre P, Davidson BL, Wang K

Haplotyping SNPs for allele-specific gene editing of the expanded huntingtin allele using long-read sequencing
Jan 12, 2023
4 (1) :100146
PMID: 36262216
PMCID: 9574884

Ruiz-Idiago J, Pomarol-Clotet E, Salvador R

Longitudinal analysis of neuropsychiatric symptoms in a large cohort of early-moderate manifest Huntington's disease patients
Parkinsonism Relat Disord
Jan 01, 2023
106 :105228
PMID: 36470173

Andriessen RL, Oosterloo M, Hollands A, Linden DEJ, de Greef BTA, Leentjens AFG

Psychotropic medication use in Huntington's disease: A retrospective cohort study
Parkinsonism Relat Disord
Dec 01, 2022
105 :69-74
PMID: 36379156

McLauchlan DJ, Lancaster T, Craufurd D, Linden DEJ, Rosser AE

Different depression: motivational anhedonia governs antidepressant efficacy in Huntington's disease
Brain Commun
Nov 09, 2022
4 (6) :fcac278
PMID: 36440100
PMCID: 9683390

Koval I, Dighiero-Brecht T, Tobin AJ, Tabrizi SJ, Scahill RI, Tezenas du Montcel S, Durrleman S, Durr A

Forecasting individual progression trajectories in Huntington disease enables more powered clinical trials
Sci Rep
Nov 07, 2022
12 (1) :18928
PMID: 36344508

Scarabino D, Veneziano L, Mantuano E, Arisi I, Fiore A, Frontali M, Corbo RM

Leukocyte telomere length as potential biomarker of HD progression: A follow-up study
Int J Mol Sci
Nov 03, 2022
23 (21) :13449
PMID: 36362235

Ogilvie AC, Carnahan RM, Chrischilles EA, Schultz JL

The effects of antidepressants on depressive symptoms in manifest Huntington's disease
J Psychosom Res
Nov 01, 2022
162 :111023
PMID: 36063627

Achenbach J, Faissner S, Saft C

Resurrection of sildenafil: potential for Huntington's Disease, too?
J Neurol
Sep 01, 2022
269 (9) :5144-5150
PMID: 35633374
PMCID: 9363275

Squitieri F, Monti L, Graziola F, Colafati GS, Sabatini U

Early liver steatosis in children with pediatric Huntington disease and highly expanded CAG mutations
Parkinsonism Relat Disord
Aug 28, 2022
103 :102-104
PMID: 36096016

Achenbach J, Saft C, Faissner S, Ellrichmann G

Positive effect of immunomodulatory therapies on disease progression in Huntington's disease? Data from a real-world cohort
Ther Adv Neurol Disord
Jul 27, 2022
PMID: 35899100
PMCID: 9310279

Tabrizi SJ, Schobel S, Gantman EC, Mansbach A, Borowsky B, Konstantinova P, Mestre TA, Panagoulias J, Ross CA, Zauderer M, Mullin AP, Romero K, Sivakumaran S, Turner EC, Long JD, Sampaio C, Huntington’s Disease Regulatory Science Consortium (HD-RSC)

A biological classification of Huntington's disease: the Integrated Staging System
Lancet Neurol
Jul 01, 2022
21 (7) :632-644
PMID: 35716693

Petracca M, Di Tella S, Solito M, Zinzi P, Lo Monaco MR, Di Lazzaro G, Calabresi P, Silveri MC, Bentivoglio AR

Clinical and genetic characteristics of late-onset Huntington's disease in a large European cohort
Eur J Neurol
Jul 01, 2022
29 (7) :1940-1951
PMID: 35357736

Harris KL, Mason SL, Barker RA

Exploring the predictors of financial impairment in Huntington's disease using the Enroll-HD dataset
J Neurol
Jul 01, 2022
269 (7) :3501-3510
PMID: 35165768
PMCID: 9217841

Quinn L, Playle R, Drew CJG, Taiyari K, Williams-Thomas R, Muratori LM, Hamana K, Griffin BA, Kelson M, Schubert R, Friel C, Morgan-Jones P, Rosser A, Busse M, PACE-HD site investigators

Physical activity and exercise outcomes in Huntington's disease (PACE-HD): results of a 12-month trial-within-cohort feasibility study of a physical activity intervention in people with Huntington's disease
Parkinsonism Relat Disord
Jun 29, 2022
101 :75-89
PMID: 35809488

Warner JH, Long JD, Mills JA, Langbehn DR, Ware J, Mohan A, Sampaio C

Standardizing the CAP score in Huntington's disease by predicting age-at-onset
J Huntingtons Dis
Jun 03, 2022
11 (2) :153-171
PMID: 35466943

Achenbach J, Matusch A, Elmenhorst D, Bauer A, Saft C

Divergent effects of the nonselective adenosine receptor antagonist caffeine in pre-manifest and motor-manifest Huntington's disease
May 27, 2022
10 (6) :1258
PMID: 35740281

Maffi S, Scaricamazza E, Migliore S, Casella M, Ceccarelli C, Squitieri F

Sleep quality and related clinical manifestations in Huntington disease
J Pers Med
May 25, 2022
12 (6) :864
PMID: 35743649

Lee JM, Huang Y, Orth M, Gillis T, Siciliano J, Hong E, Mysore JS, Lucente D, Wheeler VC, Seong IS, McLean ZL, Mills JA, McAllister B, Lobanov SV, Massey TH, Ciosi M, Landwehrmeyer GB, Paulsen JS, Dorsey ER, Shoulson I, Sampaio C, Monckton DG, Kwak S, Holmans P, Jones L, MacDonald ME, Long JD, Gusella JF

Genetic modifiers of Huntington disease differentially influence motor and cognitive domains
Am J Hum Genet
May 05, 2022
109 (5) :885-899
PMID: 35325614
PMCID: 9118113

Langbehn DR, Fine EM, Meier A, Hersch S

Utility of the Huntington's disease prognostic index score for a perimanifest clinical trial
Mov Disord
May 01, 2022
37 (5) :1040-1046
PMID: 35170086

Mohan A, Sun Z, Ghosh S, Li Y, Sathe S, Hu J, Sampaio C

A machine-learning derived Huntington's disease progression model: Insights for clinical trial design
Mov Disord
Mar 22, 2022
37 (3) :553-562
PMID: 34870344

Rodrigues FB, Owen G, Sathe S, Pak E, Kaur D, Ehrhardt AG, Lifer S, Townhill J, Schubert K, Leavitt BR, Guttman M, Bang J, Lewerenz J, Levey J, HDClarity Investigators, Sampaio C, Wild EJ

Safety and feasibility of research lumbar puncture in Huntington's disease: The HDClarity cohort and bioresource
J Huntingtons Dis
Mar 01, 2022
11 (1) :59-69
PMID: 35253773

Maltby J, Ovaska-Stafford N, Gunn S

The structure of mental health symptoms in Huntington's disease: Comparisons with healthy populations
J Clin Exp Neuropsychol
Dec 14, 2021
43 (7) :737-752
PMID: 34906020

Achenbach J, Saft C

Another perspective on Huntington's disease: Disease burden in family members and pre-manifest HD when compared to genotype-negative participants from Enroll-HD
Brain Sci
Dec 08, 2021
11 (12) :1621
PMID: 34942923
PMCID: 8699274

McDonnell EI, Wang Y, Goldman J, Marder K

Age of onset of Huntington's disease in carriers of reduced penetrance alleles
Mov Disord
Dec 01, 2021
36 (12) :2958-2961
PMID: 34536046
PMCID: 8688195

Ogilvie AC, Nopoulos PC, Schultz JL

Quantifying the onset of unintended weight loss in Huntington's disease: A retrospective analysis of Enroll-HD
J Huntingtons Dis
Nov 09, 2021
10 (4) :485-492
PMID: 34633327

Panegyres PK, Chen HY

Alzheimer's disease, Huntington's disease and cancer
J Clin Neurosci
Nov 01, 2021
93 :103-105
PMID: 34656231

Ogilvie AC, Nopoulos PC, Schultz JL

Sleep disturbances by disease type and stage in Huntington's disease
Parkinsonism Relat Disord
Oct 01, 2021
91 :13-18
PMID: 34450461

Crowell V, Houghton R, Tomar A, Fernandes T, Squitieri F

Modeling manifest Huntington's disease prevalence using diagnosed incidence and survival time
Sep 01, 2021
55 (5) :361-368
PMID: 34350853

van Duijn E, Fernandes AR, Abreu D, Ware JJ, Neacy E, Sampaio C

Incidence of completed suicide and suicide attempts in a global prospective study of Huntington's disease
BJPsych Open
Aug 31, 2021
7 (5) :e158
PMID: 34462049

Lunven M, Hamet Bagnou J, Youssov K, Gabadinho A, Fliss R, Montillot J, Audureau E, Bapst B, Morgado G, Reilmann R, Schubert R, Busse M, Craufurd D, Massart R, Rosser A, Bachoud-Lévi AC

Cognitive decline in Huntington's disease in the Digitalized Arithmetic Task (DAT)
PLoS One
Aug 23, 2021
16 (8) :e0253064
PMID: 34424902
PMCID: 8382187

Sathe S, Ware J, Levey J, Neacy E, Blumenstein R, Noble S, Mühlbäck A, Rosser A, Landwehrmeyer GB, Sampaio C

Enroll-HD: An integrated clinical research platform and worldwide observational study for Huntington's disease
Front Neurol
Aug 18, 2021
12 :667420
PMID: 34484094
PMCID: 8416308

Sprenger GP, Roos RAC, van Zwet E, Reijntjes RH, Achterberg WP, de Bot ST

The prevalence of pain in Huntington's disease in a large worldwide cohort
Parkinsonism Relat Disord
Aug 01, 2021
89 :73-78
PMID: 34243026